Literature DB >> 30324869

From engaging publics to engaging knowledges: Enacting "appropriateness" in the Austrian biobank infrastructure.

Melanie Goisauf1, Anna P Durnová2.   

Abstract

While there is consensus on the essential importance of public engagement in further developments of biobanking, the related investigation of public views predominantly focused on the concerns expressed by the publics, and the concrete formats of public engagement, without delving into the ways these concerns are constituted. In this article, we summarize recent research on public engagement in order to describe the constitution of respective concerns as "engagement of knowledges." By shifting the focus of analysis from "publics" to "knowledges," we draw attention to the interaction dynamic through which citizens embed the new knowledge they receive during expert interactions into the stock of knowledge they already possess. Analyzing our recent investigation of public views on biobanking in the form of citizen-expert panels in the Austrian infrastructure of biobanks (BBMRI.at), we trace this dynamic through citizens' recurrent concerns that the research and consent practices related to biobanking should be "appropriate."

Keywords:  appropriateness; biobanks; data; informed consent; public engagement; trust

Year:  2018        PMID: 30324869     DOI: 10.1177/0963662518806451

Source DB:  PubMed          Journal:  Public Underst Sci        ISSN: 0963-6625


  8 in total

1.  Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.

Authors:  Ngozi Nwebonyi; Susana Silva; Cláudia de Freitas
Journal:  Front Public Health       Date:  2022-05-10

2.  Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.

Authors:  Melanie Goisauf; Gillian Martin; Heidi Beate Bentzen; Isabelle Budin-Ljøsne; Lars Ursin; Anna Durnová; Liis Leitsalu; Katharine Smith; Sara Casati; Marialuisa Lavitrano; Deborah Mascalzoni; Martin Boeckhout; Michaela Th Mayrhofer
Journal:  PLoS One       Date:  2019-09-18       Impact factor: 3.240

3.  Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health.

Authors:  Dagmar Rychnovská
Journal:  Sci Eng Ethics       Date:  2021-04-21       Impact factor: 3.525

Review 4.  Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.

Authors:  Kaya Akyüz; Gauthier Chassang; Melanie Goisauf; Łukasz Kozera; Signe Mezinska; Olga Tzortzatou; Michaela Th Mayrhofer
Journal:  Life Sci Soc Policy       Date:  2021-12-13

5.  Ethics of AI in Radiology: A Review of Ethical and Societal Implications.

Authors:  Melanie Goisauf; Mónica Cano Abadía
Journal:  Front Big Data       Date:  2022-07-14

6.  Engagement and social acceptance in genome editing for human benefit: Reflections on research and practice in a global context.

Authors:  Sebastián Barbosa; Léa Paré Toé; Delphine Thizy; Manjulika Vaz; Lucy Carter
Journal:  Wellcome Open Res       Date:  2020-10-16

7.  «If you give them your little finger, they'll tear off your entire arm»: losing trust in biobank research.

Authors:  Lars Ursin; Borgunn Ytterhus; Erik Christensen; John-Arne Skolbekken
Journal:  Med Health Care Philos       Date:  2020-12

8.  What does engagement mean to participants in longitudinal cohort studies? A qualitative study.

Authors:  Cynthia A Ochieng; Joel T Minion; Andrew Turner; Mwenza Blell; Madeleine J Murtagh
Journal:  BMC Med Ethics       Date:  2021-06-24       Impact factor: 2.652

  8 in total

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